but you see,I don'thave a diagnosis, and now I never will

Discussion in 'Fibromyalgia Main Forum' started by mariac2000, Oct 16, 2002.

  1. mariac2000

    mariac2000 New Member

    so nobody can help me. Nobody has diagnosed me with FM or CFS, all the doctors, and there have been many, have told me is there is nothing wrong with me, so I have no other choice but to believe it or realize that I am crazy. I mean no anger or ill will to any of you. I believe you have saved my life up to this point. But since ther is nothing wrong with me I do not belong here.
  2. mariac2000

    mariac2000 New Member

    so nobody can help me. Nobody has diagnosed me with FM or CFS, all the doctors, and there have been many, have told me is there is nothing wrong with me, so I have no other choice but to believe it or realize that I am crazy. I mean no anger or ill will to any of you. I believe you have saved my life up to this point. But since ther is nothing wrong with me I do not belong here.
  3. Mikie

    Mikie Moderator

    Don't panic and don't give up. If all your test come back normal, it probably does mean you have one of our illnesses if you have had the symptoms for more than six months. Our diagnoses are diagnoses of exclusion.

    The overwhelming number of docs out there know little to nothing about our illnesses. Call the local hospital or the Arthritis Foundation to try to get the names of docs who treat our illnesses. We have a good doc list you can access from the Home Page here and you can see if there is anyone in your area.

    If, after all else fails, just ask your doc to prescribe to treat your symptoms. Be sure to question him thoroughly about any prescriptions and research them before taking them. Getting a diagnosis is validating, but it really has very little bearing on us unless we are filing for disability. Treatment and a change of lifestyle is what is needed now.

    Love, Mikie
  4. fibolady

    fibolady New Member

    we are going to have to keep researching "ourselves" until we find something or combination of things that help us most. i am frustrated too! yes, there is something wrong with you and everyone on the board! that is why we are here.

    doctors just see through a narrow tunnel. heck, my doctor who diagnoised me with fms has never even brought up "food allergies" that is what i am going to spend my next "round" of trying to get some of my life back.

    i have been taking meds for years and years and even though i sometimes can "go out" and function most of the weeks i spend alone at home. i hurt, so.... tired, ibs, etc. you know the drill. it is a chore just to get the little things done for my family.

    keep coming here and you will find all kinds of "new" things to try or research and just one might help. that is all i am looking for, not a cure, but just one thing that will make a really positive impact in my health.

    my family just wants me to see other doctors, they don't understand how frustrating that is. i feel like giving up too, especially this morning because of the pain, but we have got to help each other!!!!!

    warm regards, fibolady
    [This Message was Edited on 10/17/2002]
  5. stillafreemind

    stillafreemind New Member

    but..girl..you gotta help yourself. YOU can help when no one else seems to care.
    I do not have a diagnosis of cfs/fm on paper in ANY mds office. The last two docs I went to said..I do NOT believe in fm or cfs. Okay I say..hey some of these symtoms I have had for forty years..I guess I can live with them a while longer!<G> Was it frustrating..you bet! Was I depressed about the deal..You bet..for a while I was. But hey..I have access to the internet..I can read and educate myself just like anyone else can..so can you..and you must. These two diseases LOVE it when we lay down and give up. I am all for having a bad day and getting some whining in..but, in the end..hey we gotta stick together and we also have to help ourselves. (I prefer to put God at the top of this list and pray..but thats not for everyone I guess.)

    Make this the day that you take the bull(and the medical profession) by the horns..you go..you ask questions..if you want a diagnosis..find a doctor that will give it to you..if not..read this miracle of a board..there is so much info on here..it would be impossible to walk away from it and the great people here..feeling anything but better and more in control of your situation.

    Hoping you have a turn for the good in your health..still
  6. contessa

    contessa New Member

    So many doctors looked at me like I was crazy for ten years. Each doctor, each visit, I would describe my precise history and my symptoms. None of them responded until this spring when I revisited a nurse/practioner I hadn't liked very much on past visits. When I went in there I had already narrowed down my search, I'd tested for and excluded lime disease and lupus. Fibro was the only possible link left. Because I insisted she refered me to rheumatologist who made the diagnosis - finally. I suspect that in the two years since I'd last seen here, she'd gotten a lot more info on the illness than she had previously. What kept me going was a correspondence I'd had a couple of years back with an on-line doctor from Florida. He confirmed the that yes there is a direct link between bowel disorders and immune/arthritic conditions. The NP also made the link which moved her over to my side. I live in a very small communtity and have to travel farther to get the correct medical care. It's a decision I'm glad I stuck with because our closest hospital/clinic sucks. So I drive 20 minutes more to visit another town (just happens to be a bigger well equiped clinic and I used to work for them). I also have my husband drive me 5 hours round trip to visit a clinic in LaCrosse, WI because the rheumatologist and neurologist work out of there. It's rough, and now with physical therapy added I'm on the road twice a week, every week. But I was right the past 10 years. And I'm still right today. Keep after it, don't give up on yourself. In the end you will determine your health. Hopefully, you have the insurance and not an HMO that lets you go where you need to! Keep us informed, please.
  7. Carlacat

    Carlacat New Member

    It took me forever to find the right doc to DX me. Is there a doc on the good docs list close to you?
  8. BonBons

    BonBons New Member

    I agree with the other posts - we HAVE to help ourselves. That is one of the gifts I've received from my own poor health (I haven't been diagnosed with CFS or FM yet, either, but many other things). Some days I want to bury my head under the blanket and I often do. Some days I have to. But those other 1-2 days just keep putting one foot in front of the other and you'll be amazed at the fruit you will bear. Don't let you illness make you more of a victim. I'm sorry to lecture; I do understand your dilemna - and I'm nearly penniless now myself; I have no health care, and I'm out of thyroid meds, but I was on the phone this am calling my congressperson - it's day to day. Love and Peace - Bon
  9. pam_d

    pam_d New Member

    Consider this irony.... I don't know what kind of insurance you have, but the last doctor I finally saw who told me I have CFS (I believe I have FM, too--everything else has been excluded, symptoms for 3 1/2 yrs., after doing years of my own research, I believe I have symptoms of both) I walked out to the front desk & paid in cash. Because I didn't really want my insurance company to get wind of this, so many of them won't take care of people with CFS. So you are NOT crazy, you want to know what's going on with your body & want symptom relief, but you may be able to get this without that stamp on your file that says fibromyalgia or chronic fatigue syndrome. I do know what it feels like, believe me, to crave getting that definitive diagnosis, to feel acknowledged by your doctor that you really are in pain, & really do have these feelings of fatigue, when all the tests say you're fine. I used to want that confirmation so badly, but less so in the past year. Odd that I finally got it. We have all become good sleuths at figuring out that we fall somewhere in this FM/CFS spectrum, and you are certainly not crazy, as everyone says this dx is a process of elimination. You may have great insurance, too, but I don't, and I don't necessarily want that in my "official file" that's all I'm saying...for me, that was the only kind of silver lining in NOT getting a dx for years. I do know how frustrated you feel, & this group is such a great resource & place to come when you do need that acknowledgement that you are NOT crazy, here you are surrounded by peers who know exactly what you are talking about...

    Good luck & keep coming here for support,
  10. Cactuslil

    Cactuslil New Member

    I read all the responses and as I did I noted how differently we came to our "diagnosis" and how differently we began to feel there was indeed something amiss with our "sense of wellness".
    Denial can be great. It is invisible and I had it! Unfortunately I had been on prednisone (to keep working as a musician...for "some" reason my voice gave out and became scratchy) and that clouded the diagnosis process when "one day I woke up with the flu and it would not go away"!
    Pred. (steroid) clouds the validity of most blood tests including the many forms of arthritis, complicates the diag. of diabetes and on and on. Six years later I ended up with Cushings'Syndrome which was worse than anything I had thus endured.

    However this isn't about "me" it is about Marcia.

    The "family" doc I was seeing after leaving "the city" for my "hometown", very calmly began putting me through varied tests....started w/brain scan for MS, two first cousins have MS...not that, Praise to the Man...then started the weird symtoms of sudden flushing, feeling like you were about to vomit or have diarrhea or worst; oh, my gosh I was so sick...I hurt everywhere and could not even make sense to the docs or hospital docs I was so ill (symptom-wise).

    The real beginning of my real-live trek to a diagnosis was on an emergency hospitalization for severe dehydration from the above. My soon to be neuro happened to be on call that day and zapped me with a jolt of imitrix and I was shocked that I had been having a migraine. Even though I had had migraines (Sunday migraines) in my early 20's they ended by 25! I was then 45 and just had had my third child and had had good health, a great pregnancy except for not-unusual gest. diab....

    Well, getting rid of a major classic migraine proved great to allow for my recognition I was having pain...sounds screwball true but denial, true psycological denial exists!

    Well, at that particular stay, I was next to see a cardiologist..at that point I asked my doc what in heaven's name was going on...a doc here, a test here....he said...'lil' they, the specialists, have the easy job, they can say NO, not my problem, then it comes back to me...until I finally find the right doc to diagnose you and formulate a treatment plan.' AHhhhh! I finally understood why I was being thrown from doc to doc and getting in more pain and weariness by the moment!

    The last doc, this is almost 3-years into my first visit for my vocal chord prob, he sent me to a rheumi who diag. me on the spot! Now, my neuro, Mr. Imitrix at the hosp., suggested FMS at my office visit and I told him "I don't beleive in that!" WOW have I eaten those words!

    Anyway Marcia. Sometimes we don't understand what the doc is up to and must ask. Sometimes we need to pick up the phone and ask the appointment clerk if they take FMS or CFIDS cases. The point is to find a doc who is already treating patients with clearly defined FMS or CFIDS or both or all the other possibles we can find ourselves in! Thankfully I do not have a diagnosis of CFIDS and I pray I don't...I have enough to get lassoed and under control.

    I am on full disability...fought six years, even when a diagnosis was not in sight! My experience in the south texas regional of SSA, is that they pay little to no mind to diagnosis but they look closely at symptoms. Say you are incontinent on ocassion or have serious irritible bladder, IBS the whole gamat. Would you be employable as an order taker at DQ? I don't think so. and on and on.

    Like one of the ladies said above...dig, dig, dig. I told my God-given doc now not to take offense when I come trotting in (joke) hobbling in with a file for him. Abstracts on off-label uses of meds, trials I want to try, you name it. I take him a "check list" when I have an appointment and one goes to his nurse and one I keep; that way I don't forget what to ask and I can jot down his response, then I see that he puts that in his file! He has taken me aside twice to thank me for doing this. He had never planned on having a case like this present itself; he is a family practitioner and I am a mucho complicated case.

    Right now I am waiting on the home health diabetic person. My diabetes has now gotten up and reared its very ugly head and if I don't get it regulated I may lose a lower mandible and the work I have done studying that unlikelyhood was a site sufficient to discipline myself for what I now must do and that is regulate my eating and I LOVE food! Alot of wrong food; deprivation. Ugh! Insulin if and when...prandin, if and when....this is very complicated to me. I am so out of control it will go sky high then go to points just prior to losing consciousness and it is really hard to figure it all out...kind of like figuring out FMS!

    Your journey will be worth the effort; you may never have a "normal" day again but you can improve the quality of your life and have "better" days...right before the diabetes thing jumped up, thanks to an absessed tooth, I had been having about two months of "good" FMS days and you owill too. Tie a knot and hang on....know we care, we really do. Love CactusLil'
  11. fp3657@aol.com

    fp3657@aol.com New Member

    u must not give up keep going to doctors and make them sit down and listen to u.... but dont give up,,, more than anthing keep getting those referrals to the rhumetologist,, if it takes 5-6-7-8-9-10, different rhumetoligist keep going,,